What’s Happening E-News

October 28, 2019


Due to technical difficulties with our eTapestry mass e-mail service, we are unable to send the bi-weekly e-blast to your email address. We apologize for this inconvenience. We are working to correct this problem as quickly as possible with our service provider. We understand that the e-blast from October 14th was likely delivered to your e-mail Spam Folder if you would like to go back and retrieve it. Thank you for your patience as we resolve this problem.


October is Spina Bifida Awareness Month. During this month, Stefanie Hengge is revealing the exemplary experiences of six people in our local community in a series entitled, “Spina Bifida: Stories of Resilience”.  Each story portrays a person’s or family’s strength, indominatable spirit, perseverance, and creativity as they manage and adapt to some of the challenges people face when living with spina bifida. We have posted five stories on our Facebook page to date. They are also being added to our website under the STORIES tab on the home page. You all are doing a great job of posting your own stories and facts. Keep up the good work and feel free to share the stories we post, as well. Please use the hashtag #SpinaBifidaAwarenessMonth!

Stefanie Hengge is a thirty-something advocate for disadvantaged populations, primarily those with mental or physical disabilities. Professionally, she holds a Bachelor’s degree in Social Work and serves as a Senior Administrative Assistant at Cincinnati Children’s Hospital Medical Center. Leisurely, she can be found either with her nose in a book, writing, or attempting to travel as much of the world as possible. She also has spina bifida.


Hear the new Director’s vision for the future of DD services and budget updates. Learn about Individual Service Plan changes, waiting-list and waiver updates, and how technology is becoming central to a life of independence. Families will hear the ways they can “contribute to the work” and “stay in the loop” to ensure their decisions are fully informed and based on current information as they plan across the lifespan. We will ensure even youR deepest concerns are responded to by the right person. All families are welcome!

Speakers:  Director, Jeff Davis, Deputy Director of Medicaid, Deborah Hoffine, and Family Outreach & Education Coordinator, Steven Beha
When:  Monday, November 4th 9:00 a.m. -12:00
Where:  Centre Park of West Chester 5800 Muhlhauser Road, 45069
Cost:  Free for families
Registration:  online at https://www.surveymonkey.com/r/CTN1142019


Just a reminder that the Walk & Roll Fundraising pages will close on Thursday, October 31st at midnight…if you have friends or family who wish to contribute please ask them to do so by Thursday evening. Walk donations after October 31st, may be made via our Online Donation Site, please indicate in the “Additional Comments” area- the team name for which the donation should be credited.

We are still awaiting matching donations, Facebook Fundraisers, and additional sponsorship funds so we do not have a final number, but we will be very close to reaching our goal of $80,000 and that is because of YOU! Final numbers will be announced soon. Be sure to put September 26, 2020 on your calendar for the 20th Walk & Roll- plans are already underway to make the 20th annual walk special.


We have been given the opportunity to purchase discounted Festival of Lights tickets for $10/each. Tickets are good for one-day admission to the event which runs from November 16, 2019 – January 4, 2020.

The deadline to order is Thursday, October 31st at noon.


“Health Needs During Transition to Adult Care for Individuals with Spina Bifida: A Mixed Methods Approach” was presented at the 11th Annual Health Care Transition Research Consortium – Research Symposium held on the Baylor University Medical Center Campus in Houston, TX. by Executive Director, Rhonda Morrison, MSW and Meds-Peds Fellow, Ashley Jenkins, M.D. who represented the joint SBCC and Center for Spina Bifida team. The objective of this study was to identify facilitators and barriers of successful transition to adult-oriented care for individuals with spina bifida.

The Annual Health Care Transition Research Consortium Symposium features research presentations in the emerging field of healthcare transition (HCT). A variety of research topics of interest to researchers, clinicians, policymakers, parents, youth, and emerging adults are presented.

Topics include testing of HCT models of care and programs, the HCT needs and experiences of adolescents, emerging adults and families, and provider topics pertaining to pretransition and posttransition services and training. Poster sessions on HCT research will enable direct dialogue with researchers, and plenary sessions will address interdisciplinary perspectives pertaining to HCT education and curriculum development and the creation, maintenance, and and evaluation of HCT programs.